Black women’s access to HIV testing is a public health issue

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In 2017, the National AIDS Trust (NAT) found that there had been a 52% increase in the number of Black Caribbean and Black African women declining HIV tests since 2012. Yet, black women are one of the most at-risk groups for HIV and make up 79% of those accessing HIV care. So why aren’t they getting tested?

Black women face significant barriers to diagnosis testing, particularly early diagnosis and aftercare. But while there is some agreement on the nature of these barriers, there is no clear consensus in identifying their root causes nor strategies for rectifying them.

Taku Mukiwa, head of social marketing at HIV & sexual health charity Terrence Higgins Trust, says the rise in black women declining tests is because they have a low perception of personal risk where it comes to HIV. This can stem from being tested years before, despite current guidelines suggesting getting tested once a year.

“Being married and therefore perceived fidelity is probably the number one reason why black women don’t get tested for HIV,” says Taku. “While HIV transmission because of infidelity is possible, their partner having contracted HIV before marriage and not knowing their status either is also highly likely.”

“As a black woman, if you don’t have the right information in front of you, making you aware of the choices available to you, the blame does not lie with you. You have been let down across the board by the services that should have, but failed to advocate for you”

CEO of BAME sexual health charity NAZ, Marion Wadibia, however, wants to disrupt this narrative: instead of placing blame on black women, we should focus on why they are being failed across the board by health services.

“There are institutional and cultural barriers to access,” she says. “Cuts in funding have also had a huge impact. Some of the services that do the work to reach black women in a targeted way simply don’t exist anymore, or at all.

“As a black woman, if you don’t have the right information in front of you, making you aware of the choices available to you, the blame does not lie with you. You have been let down across the board by the services that should have, but failed to advocate for you.”

She lists the government’s intervention on teen pregnancies as a successful example of targeted outreach, of which black women were a key focus. A successful outreach campaign makes people feel welcomed, with the feeling that the service has been created and provided for them.

Stigma and negative attitudes towards and experiences of HIV also further distance black women in the UK from testing services — despite the virus being prevalent in African communities.

“The impact of HIV in African countries or among African communities in the UK has been so negative that black men and women often just resort to not speaking about it at all,” Taku explains. “It’s not unusual for somebody to die from HIV and for family and friends to not even mention HIV as the cause of death, or to even say it was something else, like cancer.”

“Black women are less likely to say, ‘We want PrEP and we want it now.’ You can’t use a ‘cut and paste’ approach, because what works for one group might not work for another”

Religious stigma in particular has a deep-rooted effect on the way black women perceive HIV diagnosis and care, and how they fear they’ll be perceived. The fact that HIV is mostly sexually transmitted creates a sense of shame around the topic, prompting social and moral judgements on the lifestyle of those seeking out testing or HIV care.

“Within the black community, there is progress and a huge acceptance that things have moved on from the 80s,” says Taku. “Yet, there’s still a large number of people who refuse or aren’t ready to take that in yet. I also sometimes hear things like ‘I don’t need to get tested because I go to church,’ which is also a factor that fuels a low perception of personal risk.

“Stigma is driven by ignorance, but there is also a lot of emotion attached to it too. Removing stigma isn’t just an intellectual exercise, it’s about appealing to people emotionally, too.”

Of all the challenges black women, and in particular, Black African women, face when accessing HIV testing services, early diagnosis is one of the most prominent. Often, black women in the UK only learn of their HIV status once they have become seriously ill with something that has been exacerbated or caused by the virus. Being diagnosed at this later stage makes treatment more intensive, invasive, and difficult.

“HIV treatment is free in the UK irrespective of your immigration status. It’s important that those from the black community who don’t have settled status still feel they can be tested and get treated”

“Minority groups are often less likely to advocate for themselves,” says Marion. “Black women are less likely to say, ‘We want PrEP and we want it now.’ You can’t use a ‘cut and paste’ approach, because what works for one group might not work for another.”

A 2014 survey by the NAT found that a third of Black Africans living with HIV felt they had been discriminated against because of their status. Half of those who felt discriminated against said healthcare workers, such as doctors, dentists, and hospital staff had been the perpetrators.

“Institutional racism is a key player in this,” says Marion. “We don’t like to talk about it, but it is very much there — it is not just perceived.”

While there have been laudable advances in reaching certain minority groups, such as men who have sex with men (MSM), this success has not been replicated for black women.

The reduction in HIV diagnoses from 2015-2017 has been mostly among gay and bisexual men, something Public Health England says is best explained by the large increases in HIV testing and the uptake of anti-retroviral therapy (ART). During this time, there was an overall 28% decline in HIV diagnoses across all groups; among gay and bisexual men it was almost a third (31%).

While it’s important not to play minority groups against each other, it’s essential to recognise the specific needs of groups who need interventions, taking into account nuances around language and culture. “They all have different needs, but black women’s needs aren’t being met,” says Marion.

For undocumented black women, there is an additional fear that health services will share their information with government and immigrantion bodies, or that passport details will be needed to access health services.

“One of our key areas of work is to do with misinformation like this,” says Taku. “HIV treatment is free in the UK irrespective of your immigration status. Often, people worry about the authorities being alerted. The message that this is extremely unlikely to happen needs to be pushed more. It’s important that those from the black community who don’t have settled status still feel they can be tested and get treated.”

“People think the urgency surrounding HIV care is over. Minority groups who haven’t had the same access to agency or life opportunities are being left behind by research and services”

Offering free home testing via kits that arrive in the post is another way charities and sexual health services are working around the shame that can prevent black women from getting tested for HIV. The Terrence Higgins Trust found that it was common for people to spend some time on the order page, but to not go through with the order. So, the charity introduced a click-and-collect service, for those who were worried about others having access to their mail.

The number of black women using the click-and-collect service has been “encouraging”, yet Black African men in particular were still twice as likely to use this service as Black African women.

“We need to get to a point where we start treating black women as being able to make choices and not like they have a deficit,” says Marion. “The barriers black women face when accessing HIV care are seen as a ‘black problem’. We need to move away from this — it’s a public health problem.”

HIV is now considered a chronic condition rather than a terminal one, which is positive in itself, but has created a false sense of security in areas of care and advocacy. “People think the urgency surrounding HIV care is over. Minority groups who haven’t had the same access to agency or life opportunities are being left behind by research and services.

“I get a letter to remind me to book my cervical smear test, why are we not doing the same thing when it comes to other sexual health tests?”

If you have been affected by any of the issues discussed in this piece, please contact tht.org.uk or naz.org.uk for support

Featured image is of three vials of blood against a white background. They are surrounded by small patterns of red squiggles for artistic effect

Rachel Mantock

Deputy Editor, The Femedic

A feature writer who started out in lifestyle and wellness, Rachel joined The Femedic after becoming frustrated with the way women’s bodies and intimate health were being reported on. She wanted to talk about the good, the bad, the ‘ugly’ and the ‘really ugly’, with no topic too taboo to investigate. From conversations with the women she meets everyday to speaking with doctors, she’s constantly surprised by the amount of misinformation and lack of research around women’s health issues. She’s determined to raise awareness of the female health issues that are prominent in minority groups and to get more women talking shamelessly about their bodies and experiences.

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